Hello,My 3 yo is going for her CF sweat test tomorrow at Children's in Boston....I have some questions and I am frightened of what if she does have it. If I tested as a non carrier when pregnant (via blood test) can she STILL have a chance of having this? I thought each parent had to be a carrier....does blood not always show the same as saliva/sweat/other bodily fluids for this gene mutation?She takes asthma meds daily (flovent) and that seems to help whereas other asthma meds (pulmicort) did not. Would an asthma med HELP CF? She is just getting over bronchiolitis with a chest Xray that was clear...would an xray be clear with CF?She is chronically constipated so is on miralax and I always contributed the constipation to her love of DAIRY, dairy, DAIRY. Her stools are usually large and belly is distended most of the time....I am just very scared for my baby girl....just wondering if anyone has any thoughts out there??TIA,Lindalindalou023@yahoo.com
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Scared....questions
- Thread starter anonymous
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Both parents DEFINITELY have to be carriers for a child to have CF. I honestly dont know the best way of checking for carriers....but I know to check which CF mutations I had...they did a swab of both insides of my mouth. Many meds that are used for asthma are also used for CF. Albuterol of course is one of the main ones. I also take serevent daily...which is commonly used for asthma also. Most ppl with CF....have more diarrhea without the enzymes...not normally constipated...because everything eaten goes straight through ( sorry had to be so forward). It seems strange to me...that if you were already tested as a carrier...and didnt test positive...then why they would be testing. Let us know what you find out. Good luck and God Bless!Dea30/f/cf/cfrd-also 23 yr old bro w/cf, 29 yr old sis w/o
It depends on what type of genetic testing you had. Routine testing during pregnancy usually only checks for the most common mutations. The most widely used testing (for screening and for identifying mutations in people w/cf) only tests for the mutations that cause approx 90% of cf cases in caucasions, less for other ethnicities. It screens for the most common 87 mutations. There are over 1000, most of which are very rare. Therefore, it is possible that you have a less common mutation. You actually can have a totally negative genetic screening (like the one mentioned above) and still have cf. There is a genetic test that screens for all known mutations (Ambry) but most drs do NOT use it because it's more expensive. That said, since you had negative genetic screening, the odds are greatly in your dd's favor that she does NOT have cf. A lot of drs do sweat testing just as a general rule out on all asthma patients. HTH. Good luck tomorrow. Please let us know what your dd's results are.
Hi,One thing that strikes me as a possibility for CF is the distended belly before bowel movements. But most people with CF do need enzymes unless they are pancreatic sufficient. (also possible) The carrier testing does not test for all of the mutations just the more common ones. So, if you are acarrier of a more rare mutation, you could have gotten a false result in your carrier test. My daughter was on flovent for a while and it did help her get over a few lung infections. She is always on Albuterol and cromolyn sodium - both commonly used for asthma.........Andrea
Thanks so much for the information ladies.... I will def. post tomorrow (or Friday) when we hear the results. I am just so scared of the unknown I guess. She is on flovent...also albuterol (just getting over bronchiolitis so we were alos nebbing a lot w/ the albuterol)...now I am just doing the flovent daily 2x til the cough is gone..the wheezing has stopped. Can lungs be clear on an Xray if she has CF????Will letcha know...thanks for all the great words of wisdom!-Linda (aka anonymous) <img src="i/expressions/face-icon-small-smile.gif" border="0">